DECEMBER 23–Remedies for LOVE

We came home yesterday. Our wonderfully kind friend Jimmy C sent his plane for us in Pittsburgh, and Oh my God!—it made for an easy, stress-free transfer, and we couldn’t be more grateful. To just get driven to the airstrip, board the plane, kind pilots, up we go, 50 minutes: home.

Home.

My wonderful sister Kate and her husband Phil were waiting at our house, heat on, food cooking. Over the day, my dear brothers arrived, and friends arrived, and friends have continued to arrive. Jess flew in from San Francisco today and will stay with us until she has to go back for her next treatment. Katie (Caitlin’s almost-sister) came down from New Hampshire. Jacqui, Kenley, Alyssa, Liz—-some of Caitlin’s closest friends are here right now, gathered with other friends and all my family, downstairs, as I write, and it’s wonderful.

We need people around us. Caitlin knew this. We need each other. Being alone is horrible. This past week, anytime I’ve been alone it’s been unbearable, makes me want to jump out of my body. But having people around helps so much. The Jewish custom of sitting shiva is one that I think is so smart, and I’m realizing that what’s happening right now, downstairs, is kind of a combination of sitting shiva and a good old Irish wake. I can’t always interact with all of them, but I’m grateful they are here, and I love hearing the talking/laughing/crying sounds they make.

In Pittsburgh, our condo building didn’t allow live greenery. Caitlin had always wanted a fake white tree with colored lights, so last winter we bought one. This year, we put it up right before she went into the hospital on November 16, and kept it lit as a vigil. We decided to pack it up and bring it home, and I’m so glad we did. From now on, it will be our Christmas tree. Caitlin’s tree.

IMG_4157.JPGWe are grateful that Caitlin’s story is traveling so far and wide. The comments from friends and strangers have heartened us, unbelievably so! To all of you who have written,

“You don’t know me..”

“You haven’t met me, but..”

“I hope you don’t mind ..”

Please please know: we love all of your comments. We love knowing that Caitlin’s short life has made a difference to so many people. It’s the most wonderful thing.

We are also so grateful that the Boston-area media wants to celebrate her life and pass on a) the message of the importance of organ donation, b) the need to change the regional lung allocation system, and c) the need for a new healing garden in Caitlin’s honor, to replace her beloved Prouty Garden. I  spent over an hour on the phone today, talking to the Boston Globe‘s Bryan Marquard, who is going to write a beautiful feature about Caitlin. He then spent another another hour talking with Andrew and Jess.  Bill Shaner and photographer Art Illman of the Metrowest News spent an hour here at our home today, talking with us about the importance of Caitlin’s story. The Boston Herald also wrote a truly lovely piece today, written by Chris Villani. The  photo they chose to use is from this past Mother’s Day and it both breaks my heart and fills it to bursting.   (Herald story)

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This beautifully-lit face! Mother’s Day, 2016

I’m going to keep writing these posts, for as long as I need to. They help me, and I know they are helping the people who loved Caitlin. It’s funny—-I’m a writer but all these years, I  never ever EVER wanted to write about Caitlin’s medical struggles—I felt we had lived them once and once was enough and I didn’t want to dwell inside them. I wanted us all to move on and LIVE. But this is different. These posts are keeping her alive.

We are probably going to have a private service next week, and then a very public memorial and celebration of Caitlin’s life at a later date. I’m not sure where or when—I’m a little wary of planning something during a New England winter. But I will announce it here and we want everyone who wants to come to please come.  (We just can’t do the typical wake and funeral. Standing in a sterile room with a coffin, a receiving line–it doesn’t work for us, and it was something Caitlin would not have wanted, either.)

At one point, Caitlin considered doing a masters in philosophy. She got too sick to really pursue that, but she read deeply, and was only interested in reading good, complicated things. She had no time for crap writing, junk reading, beach reads. No time. I loved that about her, loved that she got so into Virginia Woolf in high school—that she GOT Virginia Woolf at such a young age.

In the hospital, I read aloud to her from Mary Oliver’s new book of essays, Upstream.  We started when she was on the medical floor and fully ‘normal,’ and then continued in the ICU when she was in and out of consciousness. In the ICU, her blood pressure always went up when I read (a good thing on ECMO!) and we joked that she was was liking the Mary Oliver. MO talks about Emerson and Thoreau in some of these essays. They were old soul writers whom Caitlin loved. This little dish was a gift from her, and always sits on my bedside table. Remember the message, friends. It is Thoreau’s message, and it is Caitlin’s message.

IMG_4148.JPG

–Maryanne

 

 

45 thoughts on “DECEMBER 23–Remedies for LOVE

  1. Cathy Fitzgerald

    I love that you are still writing about Caitlin!!! She is still alive in my opinion. Sending love to you, Maryann! xo

    Reply
  2. Pati Garino

    Maryanne that’s written just as you speak such eloquent words..Chris Leigh and I have been following you wish there was something I could do. I hope prayers help. Nick has been considered family to the Garino family for years many years and you and Caitlin too…love to both of you…

    Reply
  3. Emily Kramer-Golinkoff

    I don’t know you and I didn’t know Caitlin, but I’ve been following Caitlin’s story and willing those lungs with all of my might. I’m 31 with CF and so many parts of Caitlin’s story were so relatable to me. Like Caitlin, I have a mom who is not only my primary caregiver, but my best friend and “mostly companion.” I have advanced stage CF and the progression of my disease has been slow and gradual. I’ve been evaluated for transplant, but determined to be too early. Now, we’re monitoring and watchfully waiting. I also have some higher risk features for transplant, so I know the desperation of having to find a transplant center that is willing to take you on (and the horror of having to advocate for your life in that way). And perhaps most of all, I relate so much to the big eyes and hunger to do so many things in the world and to do big things, and it all being tempered by a frail body and a cruel disease.

    I am heartbroken that Caitlin never got the chance to breathe deep and free with those new lungs and pursue all the things that she was so clearly meant to do in the world. She deserved that chance. She deserved it fiercely.

    I hope you know the enormous impact that her story has had on the world. The word (and the awareness about organ donation) has spread far and wide because of Caitlin’s story. I can’t tell you how many people from around the country have asked me if i knew Caitlin. Not even a television or computer screen could dull her magnetism and light. And from everything I’ve read about Caitlin (and I’m pretty sure I’ve ready just about everything publicly available at this point), that seems about right.

    Thank you for welcoming us into your most intimate of journeys these past few years. Thank you for sharing a piece of Caitlin with all of us and the world. Thank you for raising awareness about the importance of organ donation and the urgent need for revised lung allocation policies. I have no doubt that Caitlin’s story is going to change organ donation in major ways, and I only wish that Caitlin could be here to see the tremendous impact and to finally live a life unbridled by the horrors of this cruel cruel disease. She deserved that and so much more.

    My love, support and peaceful wishes are with you and your whole family.

    Reply
  4. Susan Needleman

    Maryanne…. Thank you for having the strength to continue writing these posts. They help those of us who knew Caitlin and those who didn’t know her but have been following your updates. Your memories and photos are keeping Caitlin alive in our thoughts. And for those of us who know you and Nick it’s good to hear how you are doing. Please continue as long as it helps you, as it helps us too. I have thought about you and Nick all this week after Caitlin passed into heaven. I am glad you have so many friends and family at the house right now. We definitely plan to come down from NH whenever you decide to have the memorial service. Please know that we will continue to be thinking of you……

    Reply
  5. Jennifer Brown

    Caitlin was such a gift to everyone! Everyone who knew her loved her and she loved them just as much. Always a smile on her face every time i saw her and u (Maryanne). You were always so pleasant. Caitlin had a heart of gold that over flowed everywhere she went, she was just that kind of person that everyone wanted to know. It was so nice to see u Maryanne the last few times u came in especially since i was able to ask how caitlin was doing. Ill miss her smiling face just as i have since she moved but even more so now knowing that i won’t have that chance to see her again. She will continue to live on thru the memories of all the ppl that she touched and all the ppl who knew her and how great she was. Fly with the angels Caitlin and watch over your family to keep them safe! Always xoxo Jen Brown (from cvs)

    Reply
  6. Jessica Keener

    Maryanne, I am drinking up your stories about Caitlin. Don’t stop. And I love hearing about creating a garden in Caitlin’s honor to replace Prouty. I remember Prouty when I was at Children’s for a surgery related to my bone marrow transplant. How restful it was to go outside and look at the greenery. Let me help if I can. So many people are moved by Caitlin. Her energy is igniting some kind of transformation. Keep writing and talking. Your words are glowing with such beautiful love. I’m glad you are home surrounded by others who love you. xo

    Reply
  7. Shelley Dorais

    God bless you and your family. My heart just breaks for you. When the time is right, press on with your efforts to get this broken system fixed. It will be a great tribute to your amazing daughter.

    Reply
  8. nadi matta

    I’m so sorry for your loss, our hope that she in better place where no pain or grieve
    She was always very loved person , I’m remember her smiling and how sweet was she
    May our God bless her soul
    My truly deepest condolences to you, Nick
    And the family

    Reply
  9. Nanci Sullivan

    Dear Maryanne,
    Please keep writing the blog and sharing about Caitlin, you, your family, how Nick and you got home, Jess made it in from San Francisco, Andrew, the tree and all of the media news. All of you are going to make a difference for others and Caitlin with all of her compassion and charity for others would want you to do this. I hope I have not said anything wrong or upset you or Nick by anything I have said either. Maryanne, I can’t imagine what this must be like for you, your family and friends. However, I hope I am not saying the wrong thing at the wrong time but are a superb writer and you can really capture the moments and the feelings that there is a heartbeat of Caitlin’s continuing that I feel like I am there. Would you one day consider writing a book about Caitlin and all the entire story? I think it would be a book of depth, truth, the power of positivity, perseverance, and it would be a poignant “teaching” about our humanity from Caitlin and you, Nick, Andrew and Jess for all of us. Prayers and Thoughts are sent to you and all in Boston. I am glad you made it home today. I will end with a quote from Joyce Meyer: “No one has ever said I spent too much time loving someone.”–Nanci from Pittsburgh

    Reply
  10. Andrea

    Maryanne,
    Thank you so much for keeping us updated on your arrival home. Good to know you are surrounded by loved ones. Your courage and openness is inspiring.
    I am so sorry you had to say goodbye to Caitlyn. As hard as I can only imagine it must be to keep going without her, you are finding out how to do it with each step. She will always be in your heart.
    Andrea

    Reply
  11. Gail LaRocca

    It is in the mundane moments when you least expect it that Caitlin will pop in. This morning I went for an early morning run to the convenience store to get bread, handed the clerk a 20 and he returned 17 dollars and a PENNY and I thought of Caitlin – and she doesn’t even know me. Please continue to write; all of our souls are the beneficiary.

    Reply
  12. joycenorman5

    Maryanne, I feel like I know you. Like really well. Your words brought Caitlin to life for me and I prayed for her. Your words now allow us to share in what is going on with you and your family. When I read that your precious daughter was gone I felt like I had lost a close friend. And in the following days I actually missed her, so being able to communicate with you is helping all of us who came to love Caitlin. You must continue to write until your computer wears out! You have a very special way with words and they touch all of us.
    Love and prayers,
    Joyce from Birmingham

    Reply
  13. Ann Marie Dionisi

    Thinking if you and your family during this
    most challenging time. Love that you are still
    sharing your thoughts about Caitlin XO

    Reply
  14. Christine

    Hi,
    I’m a BC alum. I never met Caitlin but I was there around the same time as her and have a few mutual friends who have the most wonderful things to say about her. I’ve been reading your blog for the past month and just wanted to say that I have been and will continue to keep praying for you and your family. I am so, so sorry for your loss. Caitlin clearly had an extraordinary impact on all of those around her and all of the communities within which she was involved. Her life is an inspiration to so many, including those of us who didn’t have a chance to know her.

    Xo
    Christine

    Reply
  15. Sharon

    Maryanne and family,
    I’m one of those ” you don’t know me people”. I’m a PT and worked with lots of CF babies in the late 70’s and early 80’s. Caitlin’s story captured my heart and soul, I prayed for her to be restored and to fulfill her dreams. I cried and hoped and prayed for someone I never met, but whose story I knew all too well. Being Jewish I can say that shiva is a wonderful thing. It’s a time to be surrounded by those you love and remember and cherish Caitlin’s life, to be sad and happy at the same time. Tell the stories, remember the small things, cry, laugh and most of all stay strong and true to yourself and Caitlin’s mission. Caitlin will always be with you, and you will always be with her. May her memory always be a blessing.

    Reply
  16. Debbie Blatz

    I want to hear more. I love that u keep writing. Please don’t stop. God bless you all. You are extraordinary people and have wonderful family and friends and have gained many more thanks to Caitlin. 💕💕

    Reply
  17. Kelly...from Pittsburgh

    I use to be a nurse at Presby many years ago and worked on the transplant floors. I have never met your daughter, but I hope her story makes more people aware of organ donation. People need to realize the gift of life that they can give to someone. The gift of organ donation gives a person a second chance at life and love. Please continue to share your story, if you get one person to check that box to be an organ donor, than you and Caitlin accomplished so much for so many others.

    Reply
  18. Kristen Kilfoyle

    Caitlin and I were introduced by Nick, as he came into my father’s showroom for some samples and in chatting, we found out that Caitlin and I had the exact same birthday! After becoming social media friends, we talked about how our fathers would enjoy our meeting but never made concrete plans to do so. I have followed Caitlin’s story, especially after seeing her profiled in the Boston Business Journal, and my family and I are so sorry for your profound loss. I always thought Caitlin was lovely, loved her style (from one Leo to another) and admired the loving bond your family has. Please keep writing about her. Her story through your words is beautiful and keeps her light shining.

    Reply
  19. Shelley

    Please don’t stop writing about Caitlin! So long as it’s helpful for you, it is immensely helpful for us, those who loved her so. I’m so glad there’s talk of a garden for Caitlin. I absolutely love this idea and would love to be involved in any way that’s helpful. I would love to see the white tree one day – we talked so much about it at this time last year!

    I love too the idea of the remedy for love being more love. Just what’s needed to hear right now. My heart is truly broken to pieces.

    Reply
  20. Terry Waite

    So grateful you are home surrounded by loving family and friends. Thank you very much for contining to take time to write; you are very brave. I feel closer to Caitlin with every word. We’ll look for the local press stories and the progress toward making the healing garden in honor of your loving and soulful daughter. I’m afraid my faith is wounded but you’re helping me heal and I hope I can helpful to you too. Sending love to Ashland and beyond.

    Reply
  21. Steve and Carol Chafetz

    So beautiful. After reading Cascade I started following you on Faccenook because of Steve’s friendship with Nick. I’ve followed your journey with Caitlin since you moved to Pittsburgh and I feel that I’ve learned so much about love and strength and hope through your daily struggle with CF. Thank you for sharing everything with us. We have so many tears about Caitlin’s death but we know that she wants us to know she lives on with us.

    Reply
  22. Mary Cindrich

    Caitlin is changing the world in the best way possible- awareness, kindness and unity of people from all over the world. She is truly
    God’s angel – we will always love her🙏🙏🙏😘

    Reply
  23. Dawn foley

    Please keep these blogs coming maryanne. Feeling contected and i love hearing of our angle. I to wanted a white christmas tree so now evertime i look at mine i will think caitlin too had onr. Sending love x

    Reply
  24. JoEllen McGranahan

    So many loving things in this message, your fast trip home in your friend’s plane, the mention of the poetry (going to have to check her out), the little dish by your bedside, and Jess. Please send my best wishes to her as she fights on. I continue to think of Caitlin and all she is to so many in ways that will never be known.

    Reply
  25. Tony and Judy Salerno

    Dear Maryanne,
    Judy and I send our heartfelt thoughts to you and Nick. We feel deep sadness for you and hope you find some measure of comfort in the outpouring of love from the many of us who have been following your journey. While it has been a number of years since we have seen you, we feel so connected to your lives. Somehow, I stumbled upon your amazing blog more than two years ago while googling for a good book—when your name and bio appeared, I dug a little deeper. Soon my monthly check-ins on Caitlin’s status became more frequent, and like many I’m sure, I grew to eagerly await each update, hoping for good news. I am grateful for having been brought into your journey—it has changed me and made me a better person. Thank you for sharing all the good and beautiful things about your amazing daughter, as well as your poignant portrayal of the daunting challenges she continued to conquer with her relentless positivity, determination and courage. I too believe that Caitlin is now in a very good place, a safe place. She occupies a privileged and intimate space, a hallowed space, which can appear when contemplating the beauty of a quiet sunrise, or when connecting with the awesome immensity of our universe through the stars above. And wherever there is goodness and kindness, she always will be there. Please continue to be strong, and allow Caitlin’s lasting presence to bring a sense of peace and tranquility to your lives, because she is now the one to give comfort and warmth, as the great circle of life provides. Sending all of our love…

    Reply
  26. kimberly Sliney

    I am so relieved that you are home now surrounded by so many family and friends who love Cailin. And thank you for continuing to write. Your lovely daughter has become an inspiration for me to continue on with my life and make it good. This is not how I felt for a very long time. Although I never had the chance to meet Caitlin, I think she came into my life for a reason. I can’t stop thinking about her and what she went through, the life she created while going through so much and the incredible parents that she has. I know the Prouty Garden meant so much to her and I love that you wish to replace the garden in her honor. If I can help with that, please let me know as I would feel truly honored to be a part of it all. Thank you once again for your updates and for letting those who never knew Caitlin feel that we knew her a little. Sending you hugs and peace. Whenever you have a public memorial service, I will be there

    Reply
  27. erikarobuck

    Please keep these posts coming. I continue to think about all of you constantly. It was such a relief to see this, to know you are among friends and family, to know Caitlin’s story is getting out, to get to know her more as a person outside of her illness. Thank you for sharing these things with us. Your bravery and the scope of your love is uplifting and inspiring. Blessings to all of you.

    Reply
  28. Burt Robinson

    God bless you, Maryanne, Nick, family
    And most of all sending love to
    Caitlin. My heart, my prayers and
    Love goes out to all. In my studies
    In spiritualism, I know that life continues
    Forever. She is with you and you
    Are with her, today tomorrow and
    Always. We are all connected.

    Reply
  29. Jane

    Thank you for keeping the updates going. I never had the privilege of knowing Caitlin, so your notes bring her into my life. I think of Caitlin — of all of you — often.

    Reply
  30. Lynne

    Dear Maryanne,
    My heart goes out to you and your family. Thank you for sharing stories of the love you’ve shared with your beautiful daughter. While I never met her, I truly feel as if I have. What a remarkable young woman Caitlin was. I will continue to hold you in my thoughts and prayers. Lynne

    Reply

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